Article Published -
What Parents Want Doctors to Know

Delgado-Martinez R, Barry MF, Porras-Javier L, Thompson LR, Howard BJ, Sturner R, Halterman JS, Szilagyi PG, Okelo SO, Dudovitz RN. What Parents Want Doctors to Know: Responses to an Open-Ended Item on an Asthma Questionnaire. Acad Pediatr. 2021 Nov 17:S1876-2859(21)00543-X. doi: 10.1016/j.acap.2021.11.007.

Abstract Objective: Unstructured parental comments could solicit important information about children's asthma, yet are rarely captured in clinical asthma questionnaires. This mixed-methods study describes parents' written responses to an open-ended question in a validated asthma questionnaire. Methods: The Pediatric Asthma Control and Communication Instrument (PACCI) asthma questionnaire was administered to parents of children with asthma symptoms presenting to 48 pediatric primary care offices (PPCP), 1 pediatric pulmonology office, and 1 emergency department (ED). Responses to the question, "Please write down any concern or anything else you would like your doctor to know about your child's asthma" were analyzed using a phenomenological approach until thematic saturation was achieved for each site. Logistic regressions tested whether sociodemographic and clinical characteristics were associated with responding to the open-ended question. Results: Of 7,988 parents who completed the PACCI, 954 (12%) responded to the open-ended question-2% in PPCP, 31% in the ED, and 50% in the pulmonary setting. More severe asthma was associated with higher odds of responding (odds ratio, 2.01; 95% confidence interval, 1.42-2.84). Based on responses provided, we identified 3 communication types: 1) clarifying symptoms, 2) asking questions, and 3) communicating distress. Responses also covered 5 asthma-related themes: 1) diagnostic uncertainty, 2) understanding asthma etiology and prognosis, 3) medication management, 4) impact on child function, and 5) personal asthma characteristics. Conclusion: Parents of children with severe asthma provided clarifying details, asked questions, and relayed health concerns and distress. None of these topics may be easily captured by closed-ended asthma questionnaires. Keywords: asthma; patient-centered care; patient-physician communication; qualitative.

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